Illumination campaign raising awareness for rare medical condition

Two buildings in Thunder Bay are being lit up each night through May as part of a campaign to raise awareness for Fibromuscular Dysplasia (FMD), a very rare cardiovascular disorder.

City Hall’s sign and the Boulevard Lake Dam are being illuminated in alternating blue or red light as part of Fibromuscular Dysplasia Awareness Month.

FMD causes arteries to become more narrow and compressed, making it more difficult for blood to flow through the body.

The disorder can cause numerous health complications including migraines, neck pain, tinnitus, hypertension, strokes and heart attacks.

Individuals living with FMD can still live a normal life (and experience a normal lifespan), but the disorder requires lifelong treatment.

Though diagnoses are uncommon, FMD may actually be underdiagnosed due to its rarity, thanks to a lack of awareness on the part of both the general public and medical professionals.

Julie Vogelsang was diagnosed with FMD in 2022.

She created a support group for those living with the disorder in Winnipeg a year later.

“I thought the biggest thing was going to be the exchange of educational materials,” Vogelsang says of starting the group. “But the biggest thing was the feeling of support. Having someone hear your story for diagnosis of this rare disease and having it understood by other people who’ve gone through a similar journey. It led to a profound sense of connection… It’s like finding a family that you didn’t know you had.”

The theme of FMD Awareness Month is that those living with it are not alone.

“If you have a rare diagnosis and you’ve never met anyone who has this diagnosis, it can feel quite lonely,” says Vogelsang.

For example, Vogelsang says just one individual in Dryden lives with FMD.

Because FMD is so rare, getting medical specialists who understand the disorder can be a challenge.

“Sometimes when you’re having a serious medical event and you go to emerge, or whatever doctor you’re dealing with, sometimes they just say ‘well yeah, you’ve had some strokes, or you just have hypertension, or just high blood pressure.’ We’ve had people that are sent home from the emergency room and told they just have anxiety,” Vogelsang explains. “If doctors aren’t familiar with different symptoms, and familiar with the disorder and its underlying causes, they might just send somebody home.”

Those living with FMD in northwestern Ontario have no access to specialists in their local communities, with the closest option being Winnipeg, where they may occasionally have to travel.

It was thanks to the need to travel to Winnipeg that Vogelsang met Thunder Bay’s only known resident with FMD, Kathy MacKay, who got to meet up with the Winnipeg support group in April.

The support group has allowed the small crew living with FMD in the region to share their experiences dealing with the disorder, the medications they need, which specialists to see, and generally how to live with such a unique medical challenge.

Vogelsang hopes that the awareness campaign will help encourage those living with some symptoms to look into the disorder, and hopes to find more individuals living with FMD.

She plans to put on a seminar with an FMD specialist down the line for her support group.